Hi - my story

Crohn's Disease Forum

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Hello all, a real Cricket nut here. My apologies for this rather long diatribe.

About 15 years ago, after getting abdominal pains for a while, I was diagnosed with IBS by my GP.

About 4 years ago I had blood in my stools and, after a colonoscopy, was diagnosed with Prostitis.

About 2 years ago I started feeling very unwell. Generally lethargic, and regular 'episodes' or 'attacks' where I would feel very nauseous and waves of weakness running through my body (believed to be drops in blood pressure). These attacks would last 2-4 hours, during which I felt frighteningly bad and were often accompanied by an impending sense of doom and hopelessness.

I also suffered from some abdominal pains, constipation, diarrhea and occasional (fresh) blood in my stools. But these were not that big an issue for me and I could cope with them.

After referral to several specialists Crohns was diagnosed, initially from a CT scan and confirmed by a Gastroenterologist via another colonoscopy.

After a course of steroids I was put on Azothiaprine and had another colonoscopy which should the inflamation to be mild and under control - no surgery needed.

However, the attacks continued to occur and I continued to feel very ill - I also had ulcers, occasional hives on my head (but rarely) and occasional mouth ulcers, itching under the skin on my arms (but no rash), joint aches (knees especially but also elbows), and, increasingly, migraines and a slight light headedness which also seems to accentuate my, normally mild, tinnitus.

So I underwent an intensive course of steroids by IV in hopsital for a week. The day I was due to leave I had an attack which worried the House Doctor so much that he immediately wired me up for an ECG (because of the drop in blood pressure) - but that was OK.

I have, since then:

Been put on:
anti-anxiety medication (Venlaxafine)
Pizotifen (to try and prevent the Migraines)
Prochlorperzine (for the nausea) taken as and when.

Had an MRI Scan (lower half)
X-Rays
Brain Scan
Echocardiogram
Yet another colonoscopy
Worn an ECG for 24 hours
48 hour urine test for adrenaline
Tests for Hormone imbalance

All 'A' OK

The specialist tells me they have run out of tests to do - can't find anything but the Crohns which he believes is well under control. He is at a loss to explain the symptoms.

However, due, in part, to being reduced to a very sedantry lifestyle, I had put on a bit too much weight. So I went on a diet/exercise plan to get back to within the ideal BMI range.

Using my own Calorie controlled diet I decided to cut out Bread. Cakes and biscuits had to go as well. Accidentally I had, pretty much, cut out all wheat based products.

And this coincided with me starting to feel better. No attacks or migraines or aches for about 3 months until, having reached my goal, I had some toast. That night I hade a severe migraine. Some bread the following week and I had a real full blown attack. A few weeks later, some breaded scampi and another attack. And, on each occasion I also get this lightheadeness/tinnitus I mentioned previously, that continues for several days.

I asked the Gastroenterologist to test me for Ceoliacs - the blood test came back negative.

My latest attack was yesterday morning, following a meal at my daughter's the previous evening - which I subsequently discovered had a small amount of flour added to the courgettes.

Should just add that I have always eaten a lot of bread and wheat products and I'm 58 years old. It all sems a bit bizarre.

So that's the long and short (mostly long) of it. Has anyone out there had similar symptoms/experiences or has got any thoughts, ideas or recommendations. :sign0085:

For those of you that had the patience to read this far, thanks for listening.

Edit - How could I forget the night sweats - most nights I wake up soaking in sweat - I also sleep very badly and have vivid dreams - could be the mdication though....
 
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Hi Cricketnut, welcome to the forum. I must confess, when I saw your username, I thought it was odd that someone would be so fond of chirpy little insects. Then I realized you are talking about the sport, not the insects!

With regards to the celiac blood test, that particular test is known for not being very accurate. The "gold standard" for diagnosing (or ruling out) celiac disease is an upper endoscopy with biopsies (like a colonoscopy, except the tube with camera goes down your throat instead of up the bum). Have you had an upper endoscopy? If not, you might want to check with your doctor about it. And even if that comes back negative for celiac, it's possible (and seems fairly common for Crohnies) to have a gluten intolerance. Meaning, you get symptoms similar to celiac and have a problem digesting wheat/gluten, but you don't have full-blown celiac and nothing shows up on any test. Either way, whether it's celiac or a gluten sensitivity, the treatment for either is cutting out all wheat and gluten from your diet, and it sounds like you're doing that already.
 
Hi and thanks Cat-a-Tonic.

Just lost my cat of 21 years - not a bad innings though.

At the moment I'm just cutting out wheat and not all gluten - May have to take the next step but it I know it'd be a lot harder.

I plan to ask my GP to refer me to a Allergy specialist - I think my Gastroenteroligist has taken me as far as he can - and he never, once, suggested I take any dietary measure.
 
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Hi Cricket and welcome :) I'm 51 and used to eat regular amounts of bread, but was a big cake and biscuit fan. When I first started having problems, I noticed that after eating those, I'd get migraines and also a real feeling of lethargy. I'd literally be falling asleep in the chair.
I've had negative tests for celiac too.
Since yeast, sugars and caffeine are big triggers too, I've been sticking pretty much to the SCD diet and it helps with the pain side of things.
Was very hard at first not to eat bread, but I'm quite used to it now. Might be worth getting your GP to refer you to a dietician so they can assess if you're getting enough carbs etc.
 
HI cricket, and welcome to the forum, it sounds like you are having a rough time of it. Especially with all those tests being done. It sound like crohn's symptoms to me. if you have crohn's then you can say most wheat produce and milk products are triggers for crohn's suffers. and especially anything in the way of whole wheat products. and oh i forgot anything high in fibre also, can be triggers. if i were you i would keep a diary of the foods that cause you grief and the foods that don't and stick to them. i been at this for 21 years now and i still use a diary but, i find that i know my triggers by now. so have a browse around keep asking questions and this is a great forum people here will respond. warmest wishes

scott
 
The thing I wondered is; when you have a Crohns flare up - what symptoms do you generally get.

I do not get too much of a problem with my bowels - some, but nothing I can't handle - it's these dreadful attacks I get of nausea and waves of low blood pressure - it is quite frightening and I feel extremely ill, deathly - no pain as such. Even the anti-nausea drugs have no affect. It feels almost as if my body is going into shock.

Is that a common symptom amongst Crohns sufferers - My specialist was a bit baffled by it and wasn't sure it was connected.
 
Hi cn, welcome! Is it the low bp causing the nausea or vice versa? Does it plumit then return to normal? What does it plumit to? Also ru on any meds causing it to drop? Does the low bp also coincide with the night sweats etc? I have naturally low bp but last yr when I was ill (intra-abdominal abscess) it seemed to drop a bit but it was more constant than waves of it. There's a good section on here re: diet which might explain more detail about food intolerances. Anyway hope you feel better soon and get good advice
 
Not sure what it drops to - have only been in the presence of a medic once while it was happening - he didn't tell me what the BP was but he was clearly concerned and quite surprised when I told him what he witnessed was a relatively mild attack - or if one causes the other - but my BP is normal outside of one of these attacks - then it is waves, coming and going every minute or so.

It is definitely not my meds - this started before I took meds.
 
When you had the 24 hr tape done did it plumit? I would prob get that repeated it def sounds like a job for the cardiologist, also is it when your moving changing position or does it happen at rest, sorry for all the questions but it sounds rotten for you. Ru stressed or panicky or ever have palpitations?
 
All the tests I have had have come back fine (apart from Chrohns). The 24 hour test had no plummits - but I did not suffer an attack while wearing it.

The attacks can happen at any time - normally when I am at rest.

I'm not normally an anxious or stressy type - but since having this illness I have found some things make me anxious, especially in the days after an attack. I have travelled all over the world, mostly on my own, for business - but the thought of such travel now makes me uncomfortable.

The attacks, however, mostly happen when I am perfectly relaxed and have had no anxious or stressy moments. Most attacks happen when I am just sat down at home.

The specialists have assured me that all my organs, including my heart, are fine. They admit to being baffled by it all.
 
HI cricket, mine flared up out of the blue and has decided to stick around this time. i haven't eaten anything out of the way. so, i am also puzzled to what brought it on this time. it could possiblably stress or another number of factors. but i am on predisone now and other drugs to keep down the inflammation down and medications for pain and i am struggling with fatiuge and nausea. nothing seems to be working at the time. so , i have to get a number of other sets of tests done again to see what is going on. i hope your flare up will end soon and return to remission for you. best wishes.:rosette2:

scott
 
Hiya Cricketnut
and welcome

sorry you're feeling rough lately, are you drinking enough fluids?
Dehydration can cause low blood pressure and especially if you're sweating too or even bleeding, these fluids and salts need replacing. Dioralyte from the chemist is good to boost your electrolytes such as potassium, sodium and magnesium. Even drinking Bovril will help. If your electrolytes are low, fainting and lightheadedness is a sign.
Also, you said your organs checked out ok? Did they check for pancreatitis?
This can cause low blood pressure too.
Hope you feel better soon
lotsa luv
Joan xxx
 
Thanks Astra

Pancreas has been checked. Don't think I have a problem with Dehydration.

My blood pressure is quite normal, other than in the specific times of my attacks, after which it is normal again.

Unfortunately, whenever I have an attack, by the time I get to see a Medic the symptoms have all but gone, apart from the once when I was in hosptial.
 
Might it be any use do you think asking to see another consultant? A fresh pair of eyes might be just what you need.

Have you been seen by any other specialists outside Gastro? Maybe a Rheumatologist, Cardiologist or Neurologist would be an idea, or an Endocrinoligist (sorry for spelling!).

To be fair I don't think your list of tests is that long. I am sure there are more out there that can be done. It may well be that what your Dr meant was all the standard tests have been done. But as I am discovering, there are alot more after that barrier, and you should insist on more to get to the bottom of this.

I won't lie to you, an upper Endoscopy is not a nice test, especially as in the UK we only get twilight sedation. But the throat numbing spray will take care of your gag reflex nicely. Maybe something to think about if you're not getting anywhere in say a few months.
 
You could buy a blood pressure machine from the chemist and take it regularly yourself when you feel normal and when it plummits and make a diary of what you've been doing at the time etc to see if there is a Pattern emerging also taking note of what it plummits to would be useful, and then letting your doc see, I think a 24 hr tape done again would be useful but only if it plummits during it though. Hope you get some answers soon.
 
Thanks Archie/Star

I've seen an Endocrinologist, Proctologist, Neurologist, Cardiologist, and a Urologist as well as the Gastroenterologist, but the latter has been the main man referring me to the others.

The blood pressure machine is a good idea - I might follow that up - would be good to have some facts to present to the quacks.

I'm going to ask to see an Allergy specialist - there's supposed to be a very good one in Winchester. Even if it isn't an allergy or intolerance, I'm sure he will have experience of people presenting him with unusual symptoms - so he may recognise them or have something to add.

Thanks for your suggestions and ideas - most grateful.
 

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